The search identified 478 results within the date limit of 2016–2020 and five from other sources for a total of 483 articles (Fig. 1). After removal of 100 duplicates 383 studies remained. Assessment of study titles led to 291 being excluded. The abstracts of the remaining 92 studies were then screened by the PI and 74 further studies were excluded on this basis. From the remaining 18 studies, seven studies were excluded on reading the article content in full. 11 studies remained to be included in the final analysis. The reasons for the removal of the seven studies and the 365 irrelevant items from the search return of 383 was varied. Qualitative studies can be viewed as being jealously guarded in terms of their trustworthiness (Creswell 2013). The screening process is important. Many studies were excluded due to being quantitative in focus rather than qualitative. Studies were also excluded due to being originally published before 2016. The other exclusion factors were by age group (inclusion of non-adults), substance induced psychosis, diagnosed across the full schizophrenia spectrum and not specifically diagnosed with schizophrenia alone and no discussion of recovery processes. There were also studies that referred to the structure of hallucination and delusion from a theoretical perspective.
3.1 Study Characteristics
The Study Characteristics Table (Table 1.) shows studies were completed in England (4), Australia (3), Germany (1), Scandinavia (1), United States of America (1) and Poland (1). The publication date range was 2016–2020: two in 2020 (Lee et al.; Tuffor) along with three in 2019 (Ngubane et al.; Peter et al.; Sangeorzan et al.) one study in 2018 (Williams et al.), two studies in 2017 (Hargreaves et al.; Sumskis et al.) and three studies from 2016 (de Jagger et al.; Gray and Deane; Nowak et al.).
The review identified a total of 11 qualitative studies with 209 respondents. Of these 209 individuals 86 were specifically diagnosed with schizophrenia alone from eight studies (Hargreaves et al. 2017 (4); Lee et al. 2019 (6); Ngubane et al. 2019 (15); Nowak et al. 2017 (28); Peter and Jungbauer 2019 (5); Sangeorzan et al. 2019 (8); Sumskis et al. 2017 (14); Tuffour 2013) (6)). The 123 respondents that remained were not specifically labelled as schizophrenic. Gray and Deane (2016) reject the diagnosis of schizophrenia by referring to psychosis for their sample of 20 respondents. Williams et al. (2018) also preferred to use psychosis to identify their 36 study respondents. The remaining 67 were specified as respondents having a serious mental illness (SMI). The ages of respondents ranged from 18 years (Nowak et al. 2016) to 65 years of age (Hargreaves et al. 2017). To ensure the quality of the research, the characteristics of the included papers were cross-checked by the secondary author of the review. No anomalies were found.
3.2 Thematic Classification
The Thematic Classification of Publications Table 2. shows four themes generated from a possible 35. Eight of the 11 included studies found medication to be important in the recovery process. Five studies saw relationship with self and the social world as being important. Six studies saw the transformation of identity to be relevant in the process of recovery. Ten of the studies viewed personal meaning of recovery as essential for understanding the recovery process.
Table 2
Thematic Classification of Publications, Number in Category.
Theme | Number of studies in each category |
Medication: the importance of in recovery | 8 |
Relationship with self and social world | 5 |
Identity transformation | 6 |
Personal meaning of recovery | 10 |
Table 3
CASP TOOL: 10 questions to help make sense of Qualitative research (Ratings: Strong = 8–10; Moderate = 5–7; Weak = 1–4)
Publication | 1) Clear statement of aims? | 2) Qualitative methodology appropriate? | 3) Research design appropriate for aims? | 4) Recruitment strategy appropriate for aims | 5) Data collection addresses research issue? | 6) Relationship between researcher and respondents considered? | 7) Ethical considerations accounted for? | 8) Rigorous data analysis? | 9) Clear statement of findings? | 10) Research is valid? | Total Score |
De Jager, et al, (2016) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Gray & Deane, (2016) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Hargreaves, et al, (2017) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Lee, et al, (2020) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Ngubane, et al, (2019) | Yes | Yes | Yes | yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Nowak, et al, (2017) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Peter & Jungbauer, 2019) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Sangeorzan, et al, (2019) | Yes | Yes | Yes | Yes | Yes | No | Yes | Yes | Yes | Yes | 9 |
Sumskis, et al, (2017) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Tuffour, (2020) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
Williams, et al, (2018) | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | Yes | 10 |
3.3 Medication
There were eight studies that reported on differing aspects of medication. According to de Jager et al. (2016) the role of medication in the recovery process was seen as an important contributor to recovery. Medication facilitated recovery processes such as participation in the labour market. Gray and Deane (2016) found their respondents talking about the positive role for medication as it reduced psychotic symptoms, which reduced distress. Hargreave et al. (2017) saw some individuals report that medication coupled with physical activity acted as a coping mechanism toward the bad chemicals they believed medication released into their body. Lee et al. (2020) found their respondents in the process of recovery without ongoing medication use. Ngubane et al. (2019) identified that medication was beneficial in the process of recovery but only if other supports were also available. In the Nowak et al. (2017) study, participants believed that medication had to be carefully managed to be of benefit. Appropriate medication was important for recovery. It was also reported that medication for schizophrenia does not prevent relapse. Sumskis et al. (2017) suggested that medication is the cornerstone of treatment for schizophrenia. They also proposed that side effects are the major challenge for those with schizophrenia. Efficacy of different medication has been found to be similar but individual responses to medication may vary. It was reported that many in their study refused to take medication due to side effects. Lastly, Tuffour (2020) suggested that the role of religion was more important than medication for some of their respondents in the process of recovery.
3.4 Relationship with self and the social world.
Some of the respondents in the de Jager et al. (2016) study described how when the symptoms of schizophrenia were most severe the needs of the body were neglected, which made it impossible to participate in physical activity. For them it was as if the mind, self, and body were seen as separate entities, where the body did not feel as though it belonged to them, and they were completely absorbed in their mental processes. Others reported that their auditory hallucinations became an integral part of themselves. A positive sense of self was critical for recovery according to de Jager et al. (2016). According to Lee et al. (2020) other internal recovery processes included changes in how respondents viewed themselves as integrated with their mental health concerns. For example, some respondents recovered their self and perceived themselves to be a whole person, not a diagnosis. Caring for self was important for the respondents in the work of Lee et al. (2020), and exercise was seen as being extremely helpful. A sense of estrangement from the self was common for most respondents in their study. Ngubane et al. (2019) found that some of their respondents discussed how schizophrenia brought about changes to self. These included uncontrollable, dehumanizing and / or risky behaviour. As reported in this study, a motivating factor in the recovery process for these participants was to regain a sense of self which helped them to go beyond the limitations of schizophrenia to become the best they could for self and significant others. These others were also important for the subjects of the Ngubane et al. (2019) study as families and significant others played a significant role by providing emotional and financial support. A positive effect on self was experienced when some respondents were accepted socially and able to contribute to their family and community. Giving back was viewed as important in the recovery process.
Leading on from the recommendations of the respondents in their study Nowak et al. (2017) emphasized that recovery goes beyond the reduction of symptoms. They argue that it is of equal importance that the process of recovery be about finding meaning and purpose in life, along with respondent self-management, physical and mental health. These considerations can foster the development of relationships with others. Relationships with others creates a sense of belonging according to Sangeorzan et al. (2019), where this was evident in their study of respondents creating and publicly sharing mental health videos (vlogging) about the lived experience of schizophrenia. This study provided the first empirical evidence that engaging in the act of vlogging about mental illness can benefit and encourage recovery in people with serious mental illness (Sangeorzan et al. 2019). Importantly, vlogging is more common an experience for individuals without a mental illness (Sangeorzan et al. 2019). This being the case the impact of YouTube on the serious mental illness (SMI) population is a breakthrough. What was found was that vlogging facilitated an environment where those with schizophrenia uploading videos about their condition connect with viewers with similar illnesses and this validates the experience of mental illness, reducing feelings of loneliness, and reinforces a sense of normalcy (Sangeorzan et al. 2019).
3.5 Identity Transformation
The de Jager et al. (2016) study found their respondents moving beyond developing a positive sense of self to describe an essential transformation in identity because of becoming unwell and experiencing auditory hallucinations. This ‘illness identity’ was seen as a positive for some respondents. In the Hargreaves, Lucock and Rodriguez (2017) study some participants reported that exercise training in a gymnasium enhanced recovery by rebuilding identity. The transformation was from one of being ill to one that saw participants identify as a sportsperson. Other participants in their study displayed substantial behaviour change where reverting back to the types of training/physical activity respondents did before they endured schizophrenia (Hargreaves et al. 2017). Respondents in the Lee et al. (2020) research discussed the importance of finding social roles as a facilitating factor in their recovery process. The transformation was experienced in shifting from being seen as a patient with schizophrenia to identifying as a recovered person. It was reported by one participant for example that the role they moved towards was that of an active citizen, as someone who is contributing/participating in the social world. Nowak et al. (2017) discovered that their respondents referred identity transformation to several processes. Personal growth, developing a positive self-identity, acceptance of their schizophrenia, developing self-esteem and self-empowerment and stigma-management. Again, the transformation is one of the individual’s identities being formed through drawing on their personal resources. Identity transformed from being ill to identifying as being recovered. Peter and Jungbauer (2019) found that notions surrounding identity and loss of identity were very present. Re-authoring/transforming identity was important for their respondents. The diagnosis of schizophrenia was seen to lead respondents to redefine their selves by creating new perspectives. The illness was viewed as a mere part of the self, not the centre of self. This was seen as a pivotal task for those in the study who were diagnosed with schizophrenia (Peter and Jungbauer, 2019).
3.6 Personal Meaning of Recovery
There were differing connotations regarding what recovery means for those individuals with schizophrenia. For respondents in the de Jager et al. (2016) study, being bold about what they had achieved through the process of recovery was significant – this included ‘being strong’ and rejecting stigma. In the Hargreaves et al. (2017) research it was shown that controlling symptoms of schizophrenia through physical activity was very meaningful for the respondents. Lee et al. (2020) found that for some in their study recovery did not mean the absence of symptoms but instead a different relationship with their symptoms. Some experienced their auditory hallucinations as being meaningful or interpretable. While others in the Ngubane et al. (2019) research defined the meaning of recovery as ‘feeling better.’ Nowak et al. (2017) found in common with the de Jager et al. (2016) that respondents not stigmatising themselves, not being identified as their illness, and viewing themselves as people with worth because they had survived schizophrenia was extremely meaningful. In addition, like many respondents in the preceding studies the meaning of recovery for those in the Peter and Jungbauer (2019) study was how to be able to cope with stigma. Specifically, how to cope with labels. Sangeorzan et al. (2019) indicated in their study that giving people control of the understanding of what their recovery process meant to them was a fundamental requirement for recovery. This was in the context of video logging about their experience of schizophrenia. Respondents found meaning in their recovery was aligned with what they could do for others undergoing the same lived experience. Meaningful recovery was characterised by having resilience, the attitude of striving to overcome the severe adversity caused by schizophrenia, for the respondents in the Sumskis et al. (2017) study. For those in the Tuffour (2020) research, recovery gained meaningfulness from being close to God. Being without God meant no recovery at all for the subjects of the study. Williams et al. (2018) discussed with participants what recovery was and what it meant. This included the concepts of “getting back to normal,” “being positive” and “having good thoughts.”
3.7 Assessment of Methodological Quality
All studies were assessed against the CASP tool (Table 2) against criteria aimed at evaluating the quality and reliability of the research. The assessment of the 11 qualitative research studies indicated consistently high quality. The “strong” results were achieved by having a score of between eight and ten “yes” scores, respectively. All 11 studies were strong across all criteria of the CASP tool. Ten of the included studies scored 10 (de Jager et al. 2016; Gray and Deane 2016; Hargreaves et al. 2017; Lee et al. 2020; Ngubane et al. 2019; Nowak et al. 2017; Peter and Jungbauer 2018; Sunskis et al. 2017; Tuffour 2020; Williams et al. 2018), with one scoring nine (Sangeorzan et al. 2019). There was one study that did not meet the criteria- “relationships between researcher and respondents”- but this was expected as the data collected by Sangeorzan et al. (2019) was limited as regards depth of content by the inability to ask follow- up questions. The study aimed to investigate the experiences of respondents with self-identified SMIs (Serious Mental Illness) who video log about their SMI on YouTube. CASP qualitative information regarding how those with schizophrenia experience the process of recovery making their findings meaningful in this context and purposeful as reliable and well formulated sources for analysis.